A stroke at age 79 disabled Butler’s father, Jeffrey. Several years later, after dementia had progressed a surgeon refused to operate on a painful hernia without installing a pacemaker. Butler’s mother was anxious to relieve her husband’s pain, exhausted with care giving. In deference to the doctors, she gave her consent to the implant. The author’s heart stopped when she later learned about her mother’s decision. This medical decision took a minute, but resulted in devastating consequences for her father and the family that lasted many more years.

What the doctor did not point out was that the pacemaker could permit Butler’s father to live in a mute and dependent state for another 10 years. The option of using a temporary external pacemaker was not brought up or discussed. The temporary external pacemaker could have been disconnected after the surgery.

Medicare would have paid the doctor $54 for a (long) office visit to discuss the temporary external pacemaker. The surgeon earned $461 for the implant procedure, and the hospital a flat fee of about $12,000, of which almost half went to the maker of the device. The hernia was fixed. In-home care for the rest of Jeffrey’s life cost tens of thousands of dollars. This is how our country’s medical cost and medical insurance problem grows.

Several years later, with her father still alive and in a demented state, Butler learned that pacemakers could be deactivated without surgery. Her father’s heart would return to its previous slow rhythm, and he would eventually die, perhaps in his sleep. Butler’s mother asked the family physician to deactivate the pacemaker. He refused.

Butler and her mother learned that her mother had the legal right to ask for the withdrawal of any treatment under her husband’s health care proxy. The pacemaker was, in theory, a form of medical treatment. But her husband’s health care proxy requested no life support if he was comatose or dying, but said nothing about dementia, and did not define a pacemaker as life support. They learned that (as of that time) no cardiology association had given its members clear guidance on when, or whether, deactivating pacemakers was ethical. No physician or hospital would help them.

Two years later (nine years after the onset of his dementia), Butler’s father finally died in a hospital, of pneumonia. His pacemaker continued to work. Butler’s mother died a short time later.. She had declined open-heart surgery after the surgeon said he would refuse to honor her do-not-resuscitate order. “It would not be fair to his team,” the doctor said.

Since her father’s death, the Heart Rhythm Society and the American Heart Association have issued guidelines saying that patients or their legal surrogates have the moral and legal right to request the withdrawal of any medical treatment, including an implanted cardiac device. In addition, it says that deactivating a pacemaker is neither euthanasia nor assisted suicide, and that a doctor could not be compelled to do so in violation of his moral values. In such cases, it continues, doctors “cannot abandon the patient but should involve a colleague who is willing to carry out the procedure.” This guideline came too late for Butler and her family.

You can benefit from the sad experience of Kathy Butler’s family during the last year of her father’s life and her generosity in sharing it with us. When you are executing a living will or medical directive, read the language that defines medical or mental triggers and removal of possible treatments very carefully. Make sure that life support can be terminated if you suffer from dementia, not only if you are comatose or dying. Make sure the directive permits the tuning off or removal of a pacemaker.